If you are a parent, you know that feeling of helplessness whenever your children are sick. You trust that your doctor will know what to do, providing guidance and wisdom that you don’t possess. However, what happens when your doctor is stumped too?
This was the dilemma facing parents Gina and Christian when their son Anthony was born. Anthony was born at 36 weeks at just over 4 pounds in weight. As time went on, Anthony struggled to gain weight and developed numerous rashes. Visits to every “ologist” imaginable commenced, and no explanations were provided. Finally, it was diagnosed as Shwachman-Diamond Syndrome (SDS), a genetic disease that affects 1 in 77,000 children. Because of this disease, Anthony’s pancreas is unable to break down fats requiring him to take enzymes every day. Every 3-4 days, Anthony receives an injection to help his bone marrow fight off infection.
Regarding infection, because Anthony’s white blood cell count is so low he is always susceptible to illness. He has been in the hospital every 2-3 weeks since August 2014 because he is always subject to infection. “There is no such thing as a little cold with Anthony,” says mom Gina. “It’s a trip to the hospital every time.” The family is unsure as to what the future holds; there is a 30% chance that Anthony will contract leukemia as he gets older.
Older brother Nicholas feels the effect of his brother and mother spending much time at various medical facilities. Recently for a school project Nicholas had to draw a picture of his family. He drew only his dad and himself. When asked where mom and Anthony were, Nicholas responded, “At the hospital.” We want Nicholas (and Anthony) to start drawing those pictures of the whole family together.
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